The Problem With the Label 'High-Functioning' Mental Illness

Let’s say I am being interviewed by a reporter right after a major sports tournament.  I tell the reporter, “It was a nail-biter! You don’t often see such high scores!”

• What is Bipolar disorder?

Could you tell me what range the “high score” would be in?  If it was soccer, a score of four goals to seven would be considered high. If it was hockey, hitting double digits would count as a high score. In basketball, both the teams would have to reach scores of well over 100 for it to be considered a high-scoring game. “High” doesn’t really tell us much. We need context to figure out exactly what “high” means.  Which leads me to this — we need to rethink the term “high-functioning” when describing mental illness.

The term “high-functioning” has never meant to be an insult to anyone.  And I understand why that label can help people. After all, when you have a serious mental or physical illness, or other disability, but can lead a fairly “normal” life, it can feel isolating.  How do you explain you are able to pay your own bills and hold a regular job, but also have a very serious illness that requires a lot of time and energy to manage?

Personally, I feel like I rarely fit anywhere. The symptoms of bipolar disorder and anxiety I experience are mostly manageable. So, I have a full-time job, do some volunteering and am working on some university courses. I have a modest one-bedroom apartment I share with my cat. Pretty “normal” stuff. But it’s “normal” stuff that for a long time, I thought was unachievable. For over a decade, I lived with my parents and worked part-time retail jobs, usually quitting before I got fired. I didn’t have any friends to speak of. And I wasn’t contributing to my community in any meaningful way. It was distressing, humiliating and isolating. So, to be where I am today, is a victory.

However, when I compare myself to my high school friends, the people I was closest to right before bipolar disorder set in, I’m struggling. They have careers, spouses, children and homes. They drive cars in which all the windows roll down (what a luxury!) and have jobs that provide health insurance and pensions. I am nowhere near that level of “functioning.” I don’t fit in with them. And I don’t fit in with people who are in the throes of a serious mental illness either. Labeling myself as having “high-functioning” bipolar disorder makes sense and I have used that term a few times.

Lately, I’ve been starting to think more about the people we unintentionally exclude in our conversations. I’m sure anyone with a mental illness has felt excluded at least a few times. I recently wrote about how modern self-help books, with the language they use and the advice they give, are not accessible to people struggling with mental illness. I am sure that was not the writer’s intent when they wrote those books. Just as I am sure when we use the term “high-functioning,” we don’t do so to put people down. But we do. Because if there is such as thing as a “high-scoring game,” there is such as thing as a “low-scoring game.” And, well, if there are people who have “high-functioning” bipolar disorder, there are people who have “low-functioning” bipolar disorder.

I know what “low-functioning” mental illness looks like. I lived in that state for years. I struggled with jobs, relationships, heck, I struggled with showering and brushing my teeth on and off for a while. The time and energy I wasn’t putting into my outward life was time and energy I was putting into keeping my brain from exploding. I don’t know how else to explain that — it felt like my mind was always on the edge of shattering into a million pieces.  It was exhausting, but it wasn’t unexpected. I had been diagnosed with type I, rapid-cycling bipolar disorder and generalized anxiety disorder (GAD). A diagnosis like that doesn’t carry a great prognosis. Really, my “high-functioning” life today, is more surprising.

When I speak publicly about my illness, I get a pretty standard set of reactions. There are those whose understanding of bipolar disorder comes from crime procedurals on TV and they are genuinely curious about how I live with the disorder. (And presumably, don’t go around committing crimes all the time?)  Then there are those who either have struggled with mental illness themselves or who have a loved one has. Their questions are always the same:

How did I do it?

How did I get better?

What medications did I take?

What doctor did I see?

My answer is simple: I didn’t do anything. My transition from a reclusive, unemployable, hygiene-challenged individual to who I am now has a lot to do with my circumstances and the people who love me. First off, I live in Canada and health care is free. I live in southern Ontario, where accessing specialists, such as psychiatrists, is easier than in remote locations. I am eligible for a provincial program that pays for (almost) all of my medications and I have never had to have the rent-versus-meds debate with myself. My parents are incredibly supportive and never pushed me out of their home, gave my any ultimatums or asked too much of me.

These are all things I did not earn. A person with type I, rapid-cycling bipolar disorder is unlikely to be able to put their life on track and keep it there without a very large safety net. It’s a safety net that was there for me when I needed it, and is still there if I should struggle again. But I did not build it, so I don’t deserve the credit for my “high-functioning-ness.”  I also recognize if right now I am labeled “high-functioning,” there is room to fall.  And that is not something I need to be reminded of.

Now let’s flip the situation. It’s one I’m sure many of you are familiar with. Let’s say there is a young woman who has been diagnosed with depression. “Just” depression.  Every day she probably faces questions of “Why can’t you …?”  She struggles to get out of bed. While she struggles with money, she can’t find the energy or focus to cook and mostly orders takeout. Her living space is a mess. She misses a lot of work. People around her wonder why she is acting the way she is if she “just has depression.” For such a straightforward diagnosis, people around her probably consider her “low-functioning.”

Pan out and let’s consider her circumstances. She doesn’t have a job with a drug plan and can’t afford her medications. Rent is extremely expensive, and she lives with roommates who only put her down. She doesn’t have a good relationship with her family and living with them is not an option. She has a history of trauma.

She didn’t earn these things, she didn’t build them. But they drag her down and keep her from healing and recovering from her mental illness. She does not deserve the label of “low-functioning.”

Labels can be helpful. Diagnoses are labels that can help make sense of a strange list of symptoms. These labels guide treatment plans, lifestyle modifications, required medical tests, etc. But we have to be careful how we label ourselves, and maybe inadvertently, others. Maybe my experience with bipolar disorder doesn’t look like someone else’s experience or the experience you expected based on literature you’ve read (or TV shows you’ve watched). That’s fine. You don’t need to give me a label because of that. I’m not flattered when you tell me I “seem so ‘normal’” or, “I’m doing so well.”

Just acknowledge each person with a mental illness has a unique history, experiences and circumstances. Even between people with the same diagnosis, the path to recovery may be very different. As with all illnesses and disabilities, what is needed is understanding, a mind open to learning about different stories and patience, not more labels.